New and terrified

Hi, diagnosed copd Oct 2015 after xray and spirometry, recalled for spirometry in June 2016, nurse said there was a significant decrease ? And that was after quitting smoking stepping up exercise and iverhauling my diet, she Gave me clenil modulite on top of salbutamol saying i might also have asthma ???? as i had been getting more breathless with pollen, had a chest infection 10th July treat with amoxycillin and pred, im so very frightened of the future (my grandad died of emphysema) andi have been put on anti depressants, i cant pick my mood up n spend all day crying and freaking out, Sorry for the whinge i know it could be so much worse but i feel i have no future, doctors are pretty useless and contradictory and i have no faith in the nurse either

[sassy59]

Welcome to the HU forum oldowl, it is very frightening when first diagnosed with any lung and breathing problem.

Please be reassured though that this is just the beginning of you managing your health problems and living well too. Well done for stopping smoking and living as well as you can. You are doing all the right things.

You may need a referral to a more specialist doctor and you can discuss this with your GP.

There will be others who will also offer support so you know you are not alone.

Sending good wishes to you and hope things improve soon. Xxxxx

[Hidden in reply to sassy59]

Thank you for replying sassy59, i will be going back to the doc this week, as at first i was told as long as i take care of myself i will have no problems then in 9 months im on 2 inhalers and very breathless, despite doing all i should have, i didn't expect any improvement in spirometry but i did hope it would have stayed the same 🙁 Xx

[Billiejean_2]

Spirometer results can be influenced by lots of factors OO. Like having a cold or an infection brewing, allergies acting up etc. of there's one thing you'll learn here it is that lung function scores go up and down. When you get over this present infection and back on your feet again, you'll probably find it's already improved.

[Hidden in reply to Billiejean_2]

Thanks Billiejean_2, that's a comfort to think it might not be on a quick slide downwards, darn nurses like to scare me with numbers then shove me out the door before i can query owt, when i had my first spirometry done she literally said "yep there's obstruction there " and shoved a blf leaflet at me mumbling read this no explaining of anything nor giving me chance to think of any questions, very frustrating

[knitter in reply to Hidden]

Hi OldOwl....think you and I must share the same nurse....the one who told me I had COPD after being asthmatic for years was the same. I had no BLF leaflet though I just retreated to the car park with my head reeling.

As others say , I have up days and down days, but other posts here show that there is hope and improvements can be made.

Best wishes

[Hidden in reply to knitter]

Hi Knitter, wow and i thought my nurse was unfeeling, that takes the biscuit, I think its the uncertainty of it all im struggling with, but starting to see that others experiences are a source of hope x

[velvet55]

Hello oldowl

Welcome.

You have a winge and a good cry if you want to.... we all do it when we are low, and you are still recovering from a chest infection.

Lots of people with a life long condition get depressed and many take anti depressants, remember they can take about six weeks before you start feeling any benifit, if not your GP can up the strength or try a different type.

You have got a future, the drugs you can be prescribed these days are very good, it's a matter of finding what suits you.

Regarding you GP and nurse, if you have no faith in them, change if there is another GP in your area...l have recently changed and am so much happier with the way l am being treated at my new surgery.

You will find lots of help and support on here, you can obtain free of charge lots of booklets about your condition from the BLF just follow the instructions and link on here.

There are many communities on HU and apart from here there is a forum on depression, why not use both, they are all very helpful.

I hope you continue with us, l am sure you will find it beneficial, and we may also make you smile again 😂

Velvet xx

[Hidden in reply to velvet55]

Hi Velvet, thank you for your kind words, ive been a lurker since last year, and have seen the great advice and comfort that is given on this board, never thought of joining the HU depression board 🙄, will deffo b looking into changing doctors, just dont want to rush in and end up with a worse one 😕 Although that would be difficult, the only food thing about 'em is they are within walking distance ! x

[velvet55 in reply to Hidden]

Hi OO

I put of changing for the same reason, but you can go on the internet and find all the info and reviews about any GP practice.

I wish l had took the plunge years ago.

Have a look on the depression forum, l am sure you will find great support as you get on here.

Good luck

xx😂

[Hidden in reply to velvet55]

Thanks Velvet, i did look on the nhs review wotsit and downloaded and filled in the form for the surgery i wanted but bottled it lol hubby on hols this week so will get him to take me for a scout around 😏 X

[diesel12]

Have you had a recent chest infection? My nurse won't do another spirometry test until 6 weeks after an infection as the results are affected.

I have mild asthma as well as copd and the 2nd inhaler really helped me especially when they changed it to fostair.

I just saw that you've only just had a chest infection so I would ask for another test in about 6 weeks as I would think that would have affected the results as it's possible it was there when you were tested.

I think being on here will help you as you'll see that it is possible to have a great life even with lung disease. I'm sorry to hear about your grandfather but that is not the outcome for everyone.

You are doing all the right things so continue with that and I would be asking for a retest in 6 weeks and maybe a referral to pulmonary rehab who will (I'm told) help with all aspects of this.

Meanwhile moan away (we all have) ask your questions and make some friends here.

Welcome and make yourself at home xxx

Shelagh

[Hidden in reply to diesel12]

Hi Shelagh, this infection came on after I caught a cold then 48 hours later i was on antibiotics n pred, feel more upbeat already just knowing people with similar problems will listen to my moaning is a massive mental boost, will push for a retest and pulmonary rehab when i go back this week, thank you xx

[Jeanjt]

Don't let it get you down I lost a brother through this last year my younger brother and I also have copd try not to read too much and yes my doc also usless but I managed to see a nice one Friday who explained a lot to me I don't work but still trying to decorate my home it may be going to take me forever but I sure ain't giving into this hope you start to feel abit better about it soon

[Hidden in reply to Jeanjt]

Thank you jeanjt, im so sorry for the loss of your brother, you are an inspiration, decorating is hard even with full health, it doesn't matter that it will take a while longer to finish ! I do try ro relax about it but im constantly anxious about infections and exacerbations, doesn't help that i didnt realise i was ill last year until i ended up in A&E one night after work and it was another two weeks before i was told i had pneumonia, had i realised how nasty the infection was i would have taken sick days, every doc/nurse I see has a different explanation or understanding of copd

[Jeanjt in reply to Hidden]

Yes I get that trouble and you never seem to get the same nurse or doctor twice that is the annoying part

[butterfly31851]

Hi OldOwl,

You moan & winge as much as you want too.

It is a very scarey time.

Not much to add that the others haven't already said, stick with the site if you want too, but also have a look at other sites on HU.

Do please keep us all updated on your progress.

Good luck & take care. x

[Hidden in reply to butterfly31851]

Hello butterfly 31851, thanks for the welcome, i feel so much better already and wish i had posted sooner, everyone is so nice and supportive, am indeed gonna stick around and who knows maybe one day i can help some one x

[butterfly31851 in reply to Hidden]

you will be able to help newie's. all sorts of questions get asked and you will probably know some of the answers. Stick with us. I haven't been on HU for very long but have found everyone so cheerful and positive. Like you, GP's don't really explain things - they only have 10 minutes! I have got a really good consultant but I am moving to another area soon to be closer to my daughter, so who knows what a new consultant will be like - back to square one I spose, still I know what to ask for eh!

[Titchy52]

Hidden from another lurker to another this site has changed my life all the people on here are the most informative and funny also caring they've all given you excellent answers hope it's reassured you best wishes Kathy x

[Hidden in reply to Titchy52]

Hi fellow lurker, thanks Kathy i do indeed feel much better ! i know i have had excellent advice and a very warm welcome from everybody, i feel very lucky today x

[Hidden]

Welcome OldOwl Are you a wise old owl with big round eyes? I was diagnosed with a lung fuction of mid 70's around 6 years and am still the same. I fortunately found this site and virtually everything I know about copd I learnt on here. The great thing about this site is we all 'get it' even if the outside world doesn't. You are no longer alone with it.

Any lurkers out there come and join in please! x

[Hidden in reply to Hidden]

Hi coughalot2, haha not wise or big round owly eyes either unfortunately ☹️, my spirometry thingy was 77% first time but i had only been quit smoking 12 days then nursey after looking at results this time said "oh thats rather unexpected" in truth its only dropped to 72% and im ashamed i made such a fuss this morning when i know many are managing on waaaaaaaayyyyyy lower, panic sets in when i cant sleep and still not feeling great despite finishing antibiotics and oral steroids. You are so right about you guys "getting it" and i had been struggling trying to make family understand and after everyone's kind patient responses today i urge any other lurkers to come out of hiding x

[mousesnan in reply to Hidden]

Well after sitting here lurking every day for months, maybe its time to introduce myself!

I was diagnosed with COPD about 5 years ago. I was told by consultant that it is very mild and not to worry about it, so I didn't!! Then the chest infections started with a vengeance ... Long story short, 2 years ago was told by the nurse that I have asthma as well ... Joy! Now taking Fostair, ventolin and carbosistrine. As long as I stsy infection free I am OK. Have changed my lifestyle and taken up cycling in a big way, which has helped my chest enormously. Not seen a consultant for 5 years now so don't know how this disease is progressing. Have recently come off an 8 week course of steroids and for the first time in over 15 years I am cough free!! So COPD is not a death sentence even if you don't understand it! Keep smiling 😁

[Toci in reply to mousesnan]

Well said!

[Hidden in reply to mousesnan]

Hi mousesnan, glad you seem to be doing ok, i like cycling but indoors on a bike at this time of year (stupid allergies) ! Im very wary of infection although find it hard to tell if im incubating one anyway lol Cant imagine being on 8 weeks of steroids 😖 I was counting down the days on a 5 day course x

[mousesnan in reply to Hidden]

I never know when I'm brewing something either! Its a shame you are affected badly by allergies. I love to get out on my bike. I've not done as much as I wanted to due firstly to that infection which went on for about 8. Weeks then I broke my arm so I'm restricted again! I hope you are able to incorporate some exercise into your life as it makes a huge difference. Take care and nice chatting to you 😁

[Hidden in reply to mousesnan]

Oh bless you mousesnan, you have been having a rough time of it, yeah i always try to exercise daily its vital for mental health too, !

[mousesnan in reply to Hidden]

It'll pass! 😆

[Mandy6513]

I had no faith in the GP who i saw and i still dont

I had seen my gp every few weeks for about a year and was just fobbed off with inhalers and masses of antibiotics.

2 weeks after seeing my doctor i was rushed into hospital where i had a scan and the consultant told me i had very severe COPD and bronchiectasis and i would probably need a double lung transplant but all my doctor had done 2 weeks previous was give me another course of antibiotics.... He hadn't even bothered to check my oxygen levels when i went to see him,, if he had he would have seen they were 76 at resting so i came home form hospital on oxygen.

I was lucky and actually have the hospital consultant and she is the only person i have any faith in so if you dont have a consultant and your not responding to the medication your on ask to be referred

[Hidden in reply to Mandy6513]

Oh Mandy6513, thats awful treatment im so sorry, i find it hard to trust doctors anyhow after a few "near misses" over the years so i do understand no faith, its a good thing you have a consultant you can trust after the appaling way you were treat, I didnt know we could request to be seen by a consultant, its not that i disagree with the diagnosis i was given but i have questions and one of my gp's admitted they know nothing about respiratory health thats why they have the nurses !

[Mandy6513 in reply to Hidden]

I am so very lucky to have an amazing consultant its just a shame i had to collapse to get to see her..

I think we all deserve to see a consultant although i know many members dont get to ...If the care your having isnt keeping you level then ask to see one because its hard enough living with this without feeling you have no faith .

You could also ask to do a pulmonary rehabilitation course if you havnt done one yet im just coming to the end of mine and they are so informative and see if there is a Breath Easy group near you...We need all the support we can get